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Patient Stories - Alejandra (IC)

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Hello, mi name is Alejandra. I´m 32 years old and I´m from Rosario (Argentina).

If you´ve opened this page, I want to tell you that you are not alone. Dealing with IC and learning to accept it is is not easy but it´s possible. In my opinion it´s very important to have the support of our family, friends or others ic patients, and also the support of your doctor. There isn't a cure for IC at the moment and sometimes it´s not easy to find the right treatment for you, so you´ll need to be very patient and to count with your doctor help, to find the or the treatments that will work for you.

Making a summery of my story, at the end of 2002 I started to realize that, in spite of going to the bath, I still was having the urgency of going to void. I went to different doctors, including 3 urologists, a gynecologist and a clinical doctor, but all my medical examinations were fine. But I knew that there was “something wrong” with my bladder.

In 2004 I went to the urologist that is my present doctor, and after a long questionnaire, and looking to all my medical exams, he told me I could had “interstitial cystitis”, a chronic disease that doesn´t have a cure at the moment. Then he confirmed it with others exams, like “urodinamia” and a bladder biopsy to rule out other disease like bladder cancer.

At the moment I didn´t pay attention to the words “chronic” and “there´s no cure for it”, at that moment I was “happy” because someone had “gave a name” to all my discomfort and pain”.

As soon as I had the diagnosis, I went to internet and started looking for information about ic. It was then when I started to panic!!But, thanks good, I met Florentina (by e-mail) from the IC-Mexico Association who helped me a lot, then I met Monica from ACACI (España), who gave me a lot of information and also became my “internet-friend”. Thanks her, I met Marcela, from another city of my country, and also became “internet-friends”. Now we have a very big internet-group with patients suffering from IC from all around the world. We share information, we have someone to talk when we are not feeling well or when we feel alone. It´s very important to have others IC patients to share what is happening to us. I´m really happy to have found so many friends with IC in internet from all around the world!!thank you all!!

In 2006, I went to buy Elmiron to a pharmacy and there, by chance, I met Liliana Bacchi, another IC patient from Rosario. We became very good friends quickly, and with the support of others IC patients, we´ve set up ARACI (Aociacion Rosarina de afectados de CI- An association for IC people in our city: Rosario). Our Spanish web-site is: www.araci.org.ar

My symptoms are: burning and bladder pain, urgency and frequency, the feeling to void after going to the bath, voiding also at night (7-10 times), that´s is better taking alprazolam to sleep, so now I just get up to void at night only 3 times at night, more or less.

I´ve tried with: oxibutinin, different antidepressants, DMSO and xilocain instillations, gabapentin, intravesical hidrodistension, three Elmiron a day, but anything takes my “burning” away. Now I´m just taking alprazolam to sleep and I´m trying with estrogens pessarys 3 per week. I also watch my diet, and I´m trying not to drink bottling drinks, or eating things I must not eat like chocolate, acid fruit, or very seasoned food.

Sometimes I´m better than others, sometimes I´m bad at all, but I have my husband, my family and my IC friends to help me when I´m not very well. During my periods my symptoms get worst and sometimes I can´t even have sexual relations, but thanks good my husband understands me.

I repeat: being in touch with others IC patients it’s very important for me, because we can speak about things that maybe others can’t understand, and to talk about what we feel maybe will not cure us, but makes us feel a bit better!!!!

 


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